abbriggs Posted March 7, 2009 Report Share Posted March 7, 2009 I have been reading the forums for a while now, but this is my first post.I kinda wanted to give an overview of everything that I have been through and see if anyone else can relate. Completely normal pregnancy and gave birth to my son in Feb of 2003 at age 25. 2 years later pregnant again and very sick this time. I had a 2nd trimester miscarriage. I felt better immediantly. Almost a year later I got pregnant and again and had another miscarriage. Much earlier this time. About 3 weeks later I started feeling horrible. Every time I would stand up my heart would pound and everything would start to go black. I had my husband take me to the emergency room where they could see that every time I stood up my pulse would sky rocket and my BP would drop. I told them that this is how I felt when I was pregnant and they said you just had a miscarriage there is no way you could be pregnant and told me I was having Anxiety and pumped me full of Xanax which relaxed me but, did not do anything for my heart rate. 3 days later still feeling horrible I took a home pregnancy test which came back positive. This was pretty much the begining of everything changing for me.I pretty much spent the first 20 weeks of my pregnancy in Bed. Everytime I moved my heart would race. I would just stretch in bed and my heart would race. I had hyperemesis (severe morining sickness) and was put in the hospital 7 different times to be rehydrated. They thought that I was just severely dehydrated and that was what was making my heart race. I had never been so miserable in my life. Finally at about 22 weeks I got better. I had about 2 months of feeling good. At about 30 weeks I got put on bed rest for my BP. This time it was getting to high. Everytime I would have any type of contraction not only would I feel the squeezing of my abdoman I would also feel it in my throat. It would feel like someone was choking me. This was almost unbarable. I went in for my 36 week apt and my BP was 160/130 and I had my daughter by c-section 2 hours later. After having her my BP did not go down, so a lot of the next few days is very fuzzy. They tried all kinds of medications to get it to come down. I just really remember that I felt like someone was choking me and heart pounding in my throat. They finally got it to around normal when I was laying down but every time I got up my pulse would go into the 200 and my BP would sky rocket again. They did an echo and said that my heart was pumping like I had lost a lot of blood during surgery so they gave me lost of fluids and I started to feel better. They sent me home after about a week and I was pretty much on bed rest again. I called my cardiologist and told him that every time I got up my BP and pulse would skyrocket and he had me come in to see him and he immediately put me back in the hospital.I was told that I had POTS and was put on Beta Blockers (Toporal 100 mg). After about a week I could actually get up and function simi-normally. I would get very dizzy alot and very sweaty. Was told this was just something I would have to deal with. After a while my BP and Pulse would be normal when I was up but when I would lay down my BP would be about 75/35 and my Pulse in the 30's. This was actually very uncomfortable. I would feel like I was just putt putting along. It was about this time that my apt with Dr. Ben Levine in Dallas finally came around and I went to see him. He gave me a diagnosis of Secondary POTS due to deconditioning (bed rest). He helped me start coming off the beta blockers very slowly and recommended that I start a vigirous exercise program. It was during this time of coming off the beta blocker that I started feeling a strange sensation. I woke up early one morning with this internal vibrating sensation. It was one of the most disturbing feeling I had ever had. Like holding a weed eater. After about an hour it went away. This lasted during the night and morning for about the next week. Then went away. Every seemed normal for the next few months. I got the flu in January but seemed to recover fine.Then one weekend in April (08) I suddenly started having what seemed like panic attacks for no reason. I had them for two days and then that went away. Some of my POTS symptoms started coming back. Heart racing after eating, having to sit before I got up then I got a numb spot in my leg, a tremor in my right hand, choking feeling and the weird vibrating sensation was back. To go along with this was a tiredness that I had never experienced before. I would be fine then all of the sudden I would need to sit down. My body feels like jello. It takes energy to blink and breath. I can hardly move and after I sit for about 40 minutes I am fine. So because of all of this i went to see a neurologist who did a spinal tab, muscle biopsy all came back fine and did some blood work. He checked for high levels of copper in my blood. This came back positive. My Free Copper in my blood was 570 and it was supposed to be less than 20. It is now almost a year later and we are still trying to get the copper to come down my last test showed a level of 210. Slowly but surely it is coming down. High Copper can cause Autonomic Symptoms.Sorry this is so long i just wanted to tell all of my story and see if anyone else has high copper or a tremor. It has been a long 2 1/2 years and I am hopeful that we are on a path of figuring this all out.Thanks for readingMandi Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted March 7, 2009 Report Share Posted March 7, 2009 have you been told you have wilson's disease? high copper in bodyhttp://digestive.niddk.nih.gov/ddiseases/pubs/wilson/#what Quote Link to comment Share on other sites More sharing options...
abbriggs Posted March 7, 2009 Author Report Share Posted March 7, 2009 I had a liver biopsy done which came back negative. So they don't think that I have Wilson's. i just have a lot of the symptoms. Tremor, Autonomic Disfunction. I was just wondering if anyone else had a tremor and or high copper. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted March 7, 2009 Report Share Posted March 7, 2009 yes have tremor..some days more than others. My ANS endocrinologist noticed it kicking up big time yesterday when I saw him..we are sure mine is from the adrenalin surges. had them for years Quote Link to comment Share on other sites More sharing options...
all4family Posted March 7, 2009 Report Share Posted March 7, 2009 Hi Mandi,Sorry to hear of all you've been through. I had pre-eclampsia with my first pregnancy, but I was able to carry to term after 3 months of bedrest. I also had a miscarriage with my second pregnancy. That must have been awful for what you went through. Your question about copper raised my intrest because I remembered my copper being one of the tests that were off, but didn't worry because the doctors didn't say anything. So I went and found my paperwork, and my copper was low, it was a 24 hour urine though not a blood test. So I don't know if it means a thing or not, but is interesting. I hope you are feeling much better now that your copper level is coming down.Suzy Quote Link to comment Share on other sites More sharing options...
abbriggs Posted March 7, 2009 Author Report Share Posted March 7, 2009 Suzi,My copper level has always been low in my urine, but not in my blood. It was not until I started taking medication to get the copper out of my system that I started having it in my urine. There are a few different ways to test for copper. Urine, Free copper (which is free flowing in your blood, not bound to anything) and Total copper which is free copper and copper that is bound to the protein that helps get it our of your body. I do not make enough of that protein (ceruloplasm) to help the copper get out of my system. So I take medication to get rid of it. I have good and bad days. Copper also interferes with hormones. And we know that hormones make POTS worse. Quote Link to comment Share on other sites More sharing options...
Pokey Posted March 7, 2009 Report Share Posted March 7, 2009 Suzi,My copper level has always been low in my urine, but not in my blood. It was not until I started taking medication to get the copper out of my system that I started having it in my urine. There are a few different ways to test for copper. Urine, Free copper (which is free flowing in your blood, not bound to anything) and Total copper which is free copper and copper that is bound to the protein that helps get it our of your body. I do not make enough of that protein (ceruloplasm) to help the copper get out of my system. So I take medication to get rid of it. I have good and bad days. Copper also interferes with hormones. And we know that hormones make POTS worse.Glad to hear that you learned what was wrong, Mandi. I'm curious, how did you reduce copper plasma levels? Quote Link to comment Share on other sites More sharing options...
all4family Posted March 7, 2009 Report Share Posted March 7, 2009 Hi Abbriggs,Thank you for that information. So what I am understanding from what you said is that your urine is low in copper because you are not able to get rid of it? I will go look and see if they did a blood test for my copper. I don't think they did. Thanks for bringing this subject up. And thank you for telling me about the urine thing. Suzy Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted March 7, 2009 Report Share Posted March 7, 2009 Thanks for posting this ... I was wondering about this ... So I googled dysautonomia copper mercury and found this article. It's a case study of a man with dysautonomia who had a very thorough workup. Near the end it says that heavy metals have been linked to dysautonomia. I was astonished to see all the other possible causes ... http://www.pubmedcentral.nih.gov/articlere...#b12-tcrm-4-837While heavy metal exposure has been linked to peripheral and autonomic neuropathies, our assays for lead, mercury, nickel, chromium, and copper were normal (Rubens et al 2001).And the article takes you to this reference ... Rubens, O; Logina, I; Kravale, I, et al. Peripheral neuropathy in chronic occupational inorganic lead exposure: a clinical and electrophysiological study. J Neurol Neurosurg Psychiatry. 2001;71:200?4. [PubMed]His labs were negative for this BTW .. regardless, it's good to see a study has been done on this so hopefully you're on the right track. I'm assuming you can link to it directly from this site. On a side note ... I found this article interesting because among a ton of other stuff, they recommended something called nutrinerve with ALA, GLA, benfotiamine and borage oil ... and later go on to say that it could've been this that helped ... now to figure out what these are ... " (5) the use of ?NutriNerve? (alphalipoic acid, gamma linoleic acid, benfotiamine, and borage oil). "Marcia Quote Link to comment Share on other sites More sharing options...
all4family Posted March 7, 2009 Report Share Posted March 7, 2009 Hi Marcia,Thank you for posting that. He has the same antibodies that I have. Maybe there is a relationship! Suzy Quote Link to comment Share on other sites More sharing options...
abbriggs Posted March 8, 2009 Author Report Share Posted March 8, 2009 I take a prescription of Zinc Acetate 50 mg 3 times a day. Copper and Zinc fight for absorption in the bowls. There are a few other medications that you can take but the side effects are horrible. I also take 10 mg. of Paxil. Which has helped me to gain 40 pounds. But my Dr. does not want me to stop taking it until my copper is back to normal.I do have elevated levels of Mercury, Lead and Aluminum in my Urine. I have also been told that I have Chronic Fatigue. But I am not tired all of the time. Isn't chronic fatigue when you are tired all of the time. It just come on all of the sudden then goes away. Does this happen to anyone else. Most of the time i have shortness of breath.I also had an ablation on my heart for SVT. This seemed to help me. I still have sinus node tachacardia Quote Link to comment Share on other sites More sharing options...
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